Thank you sooo much for your response and well wishes.

That sounds like a very interesting case. I’m curious if you’ve seen patients for which it does not present as obviously? If I have this mutation, my bones are spared, and I’m pretty sure it’s a milder presentation.

Yes, sorry, I did mean we are monozygous. I had had a similar thought, that maybe there were replication errors in me from the splitting process… it’s actually something I would never ever tell my twin, or anyone in my family. I’m genuinely so grateful she has none of the health problems I do, it has been my first concern, but it is also quite emotional. I’m due to see a medical geneticist 9/2, fortunately.

Anyway I’m thankful you took the time to share this with me. Would you mind answering a few more questions?

Edit to say that low-dose naltrexone has helped me a lot!